Chemo Buddy Needed - Anyone Currently on Eribulin?

[pussy]

Hi All

thank you for replies i see we are from all over the world i am from England in the north east of lincolnshire 

i will try and get on here more i have not actually been told i have funding yet 

i did tell nurse i had not heard anything when she rang regarding putting my pic line i assume i must have it or else i would have hear by now

Has any one lost weight if it has gone to liver as i have, but i put it down to my Zumba and we rescued a dog Sept so been doing more walking than i did before plus my mother died November so i could equate it to all of that i have lost 8lb mind you with all the hormone treatment etc i could do with losing it as long as it is my activities and not because it has gone to my liver

wishing you all well

kay

[Moijan]

🎎🎎🎎🎎🎎

i often think its such a shame we cant all get together for some fun during  our treatment sessions.......wonder, if in the future somewhere,...... will be able to book yr seat like going on a bus journey.   😃 Or a dental appt.

stranger things have happened.

M💜

[Moijan]

Hello Kay!

the very more...the very merrier.yes you are exactly in the right place.😀

very best of luck with Eribuln...and with your pik line too.

we are a jolly lot on here.....keep us up to date about how things go xx

withasmile does her bit to keep me smilingxxx

Moijanxx😎😀😍💚💙💚

[withasmile]

hi Kay,

I just wanted to say I also had such a severe reaction to capcitabine it put me in hosptial on a drip for a week, and afterwards I said no more chemo because it had been so bad but after a lengthy talk with the onco I started on Eribulin.

Its been absolutely fine with just a few side effects but no sickness and its nothing like capcitabine.

Its been lovely having Moijan to chat with and compare notes.

Wishing you all the best

[pussy]

Hi moijan

is this were i should be fo eribulin posts  i am having picc line in on tuesday  but i am going out for afternoon tea the following week with friends i o not want to miss that as one is off to live in new Zealand so have asked to start on the 22nd

thank you for your comments on the other thread it has calmed me down a bit it is always daunting when being put on a new chemo especially as i had such a severe reaction to capcitabine it has made me very nervous

perhaps i will find time to come on this site more but as i suffer sleepless nights by time i get up do my house work walk dog look after grandchildren i am usually to tired to even read a book these days

 take care all

kay

[Moijan]

One of the listed side effcts is urine infections...not sue how that could be tho, yes had a few before, but many more since I started erib.

Moijanxx

[withasmile]

No urine infections Moijan...yet! But of course we never say never 😉

Did you have them pre chemo? Sometimes I wonder if it exaccerbates what we're prone to getting, I seem to get thrush really easily.

They say drinking cranberry juice is very effective, matbe worth a try?

Stay warm

xx

[Moijan]

Yes withasmale, these drugs can affect some people like that...so far ive felt ok.

have you had any urine infections on Eribulin? Must admit im fed up with getting thrm!

xxx

Moijan💙💙💙

[Moijan]

Hi Marnster, great to hear from you. Lucky lady being in Oz

i wont say sorry about the heatwave! 😎  But im sorry its making you tired. I was interested to hear youd changed states and now dont know anyone...very brave, but have you any family nearby perhaps?.

wouldnt it be amazing if your scan shows a dramatic improvement! Then you might feel in a quandry?

anyway, very best of luck with your new trial snd pease keep in touch with us.....xx

love,

moijan 💙💙💙

[withasmile]

not a great fan of amitryptiline, was prescribed it many years ago and had what can only be politely described as a 'psychotic episode' 😉

[Marnster]

Hi all!

Sorry I've been so quiet lately. Have been very busy moving from Sydney to Queensland. Finally got up here on Thursday and have spent the last couple of days relaxing and recovering, swimming and going to the beach. 

I had my last Eribulin treatment on 1 February. I have a CT scan and meet with a new oncologist on Wednesday to discuss going on the clinical trial. The worst thing about the move is having to leave all my medical practitioners and will have to make new relationships. 

My Day 8 treatment of Round 5 went fine after my Day 1 treatment put me into hospital briefly. Couldn't find any reason for it. I may have just picked up some kind of virus that made me unwell and gave me a temperature. 

No, I didn't meet up with the other woman in Sydney. It took about a week for them to sort out private messaging on my account and give me access to it. By that time, I was in full moving mode and busy every day with lots of little jobs I had to do befor I could move. 

Hope all is well with you and you're not freezing too much. We are having a heatwave at the moment which is making me quite tired. Fortunately I am staying at the beach at the moment so it hasn't been as hot here. There is usually a cool breeze or other ways to cool off in the water. 

Take care everyone. 

[Moijan]

So...... now have revised my opinion of amitryptiline xxx I think I had taken half a tablet before but last night braved it and took a whole one x

[withasmile]

xx to you too...you've comforted me more than you'll know

[Moijan]

Should read10 mgms of amitryptiline! Actually it is really an antidepressant.... but they use it in piddly doses for sleep probs. moijanxx

[Moijan]

Am on the mobile so missed your comment to me-just replied to your reply to Helena, yes am in total agreement re s/e. Took 10 Ng's of amitryptiline last night and slept from 12-9... golly that was quite good now I think of it!
My GP said it would help and it has! Any chance of your asking yours? Not sure about steroids for sleep.... they will increase your appetite for you tho xx
moijanxx

[Moijan]

Withasmile xx
That is so generous of youxx thank you. I had been meaning to say, just how comforting it has been to get to know you a bit and to have you as a. Chemo buddy xxx

[withasmile]

hi Helen,

glad you're reassured by the 2nd opinion team and have braved the hair cut!

It's quite nice knowing that other ladies here are on a similar path and sharing their opinions and tips, sometimes its good to talk side effects, altho we really are lucky with Eribuln that the side effects are managable and minimal compared to other chemos.

Moijan pointed me in the right direction for quite a few solutions I wouldn't have considered.

Hve a lovely w.e

xx

[withasmile]

Moijan-

so pleased your tms are down.

Also reassuring to know I'm not the only one with insomnia 😉

The treatment has all these little niggles which we whinge about from time to time but it's still the easiest chemo I've done so far.

I was offered low level steroids daily to combat the fatigue which is my biggest bugbear, I'm still undecided whether to go ahead

Hope you have a lovely w.e- freezing cold here today

xx

[Moijan]

Helena, glad you enjoyed your day at the Marsden - a wonderful place.

did you have bloods etc, scans etc or just go with a bag of results?

So, ........soon you will be a SpongeBald  like us ........great stuff!  We like meeting new chemo buddys on here!

And its a really easy chemo....wonder drug.

do let us know how you get on. Hugsxxx

Moijanxxx💚💜💙

[Moijan]

Hi there Withasmile,

yes the insomnia is a bggr! Have had some success with Zopiclone.......but it stops working after a while if its every night...leaves a nasty taste...

also was given Amitryptilne to try, that does nothing really.

s'funny tho withasmile....some nights I sleep thru with nothing.!

my hair is fuzzy grey on top and longer at the sides...but very thinly......am getting a hair tattoo, lol

Tms are down again! 

much love,

Moijan xxx💚💙💜

[helen44]

Hi

I haven't started Eribulin yet, see onc Wed to sign forms etc, so hopefully fairly quickly after that. I was waiting until I had had my 2nd opinion at the Marsden who agreed with my onc. What a lovely oncology team there - so helpful and reassuring that my own onc is giving me all the correct treatment.

Had my hair cut this week in preparation! Thanks for all your hints & tips everyone, much appreciated.

Will let you know how I get on.

Love Helen x

[withasmile]

hey!

Had day 8 on Monday so v much looking forward to next week off.

Soooo tired. Had insomnia all week, been getting up around 4am cos I'd rather keep busy than cope with the early morning what-if thoughts.

One more cycle before they scan.

Hair seems to have stabilised and stopped dropping out, its very very short but at least there's a covering. Still no eyelashes or brows, I don't reckon they'll bother to come back!

Hope all is going well with you?

xxx

[Moijan]

WITHASMILE....yoo hoo, how is it going?

MARNSTER did you go home and id you ever meet up with the other lady?

HELEN are you now on Erib and how is it going?

hugs

Moijanxx

[Moijan]

Ok Nicky...for Bousy.

Bousy ...this is a very supportive thread( arent they all? )

here again isa copy of my post on the Eribulin thread. I tend to check here more often

Ok Bousy,

Eribuln has worked very well/wonders for me so far. I started it in June and the bc is now non active! They find it very hard to find the scar tissue on my mri scans. please PM me if you do go on it and we can chat more. Xx

i hope that gives you some optimism if you go on it...I went on it after cape, letro and vinorelbine failed.

Eribulin regime.
three week cycle intravenous, ten minute infusion:
week one. Onc, then. day 1 chemo if bloods ok
week two. Day.8 chemo if bloods ok.
MRI three monthly

i have found it very workable as a chemo...minimal side effects. Was given an antiemetic premed, but this made me panicky...stopped it and now no panic andno nausea/vomiting ever.
I lost my hair....
slight constipation if not drinking enough.
urine infections ....have had a few but prob because I wasnt drinking enough...have learned my lesson!

Dry eyes, taking eye drops.

does lower the white count, so I am given filgrastim..to inject myself with
very best wishesxxx

Moijan.💚💚💚

[nicky08]

Bumping up for bousy

[Moijan]

Hi Marnster,

that was really weird wasnt it? 

These drugs do play havoc with our chemistry tho..my lfts have bern way too hight for two years now on chemo!

wish I was over there xx

Moijanx

[Marnster]

After saying I'd barely had any side effects in my last round, I must've jinxed myself! Had day 1 of round 5 on Wednesday and spent most of Thursday feeling pretty awful with diarrhoea and headaches. By late afternoon I noticed that my forehead was quite hot and I started to feel a bit shivery. So I took my temperature and it was 38.5 degrees.

i thought about it for a while and then I thought the most sensible thing to do was go to Emergency at the hospital. It was a public holiday here yesterday for Australia Day. Anyway, they confirmed I did have a high temperature and my heart rate was a bit high so I was admitted and they ran a bunch of tests. Came back clear for infections, chest X-ray clear, white blood cell count fine so all they can put it down to is a bad reaction to the chemo. I've never had a reaction like that to any of the chemos I've had so it took me by surprise!

Anyway, I ended up spending the night in hospital and my temperature had come back to normal by 6am. Still here now hoping to be discharged soon. 

A very interesting way to spend Australia Day!

[Moijan]

Hi Withasmil,

yes my hair is growing but at varying lengths and thicknesses...quite lng at the edges and back, plus baby hair very thin around the top....wish we knew why/how so we could tackle it!

day 8 today, vein snazzled first attempt. Almost 14 days to give them a rest...

whoop whoop

Moijanx

[withasmile]

hi Helen,

Sorry you have to have more treatment.

I've found Eribulin is nowhere near as bad as the taxol chemos; my hair went quite thin at the start so I cropped it short ( in a fit of temper one morning!)  but its thickened up now and altho not growing much its not falling out either. I was completely bald right through my whole course of Taxol

This is the fourth type of chemo I've had and by far the easiest regime so far- and its shrinking the tumours too!

Let us know when you start

xx

[Moijan]

Welcome Helen, xx

the stats indicate 50% either way. 

Wish you the very best with this lovely drug...as chemos go, it seems pretty gentle......only takes 10-20 mins to give too!

hugs, Moijanxx

[helen44]

Hi Moijan & anyone else on eribulin,

Am going to be joining you very soon, hope you're all doing well on this drug.

Does your hair always fall out? I have a wig & turbans from docetaxol days & don't mind them but have just spent 2 years growing hair to shoulder length again.

Love Helen x

[withasmile]

hope your day  goes smoothly Moijan and veins aren't an issue this time

xx

[BonitaE_BCC]

Hi all,

Apologies to those who have not been able to access private messaging. I have now enabled that for you and you should be able to see an envelope image in the top right corner of your screens within a few hours.This envelope icon is where you will be able to send and receive personal messages in which to share contact details. 

Please email me at moderator@breastcancercare.org.uk if you are still not able to see the envelop icon.

Best wishes,

Bonita

[Moijan]

Hi Marnster,

the moderator will activate your pm service...had tried to pm you myself with no luck!

moijanxx

[Giedre]

Hi again.  You must live near me in Sydney if you are treated at the Chris O'Brien Lifehouse.  We live in Mascot but my oncologist is at Royal North Shore hospital. We are in the process of selling our home in Canberra, but love Sydney so spend most of our time at Mascot.

We will be in Mascot next week, maybe you would like to meet for coffee?  I have trouble private messaging too.

[Marnster]

Hi Giedre

I just tried to work out how to send you a private message, but I don't seem to have that option!

Yes, I am in Sydney but only for another couple of weeks. I'm moving back to Brisbane to be closer to friends and family. I've been getting treatment at the Chris O'Brien Lifehouse. 

I have TNBC. Initially diagnosed in June 2015. Found it had recurred on chest wall and mammary node and spread to lungs in October 2016. Mets are quite small but growing and my CT scan earlier this month found some more. But I feel pretty good and no significant symptoms. 

Cheers. 

[Giedre]

Hi Marnster.  My UK buddy Carolyn52 emailed me to say that you are from Australia and Sydney as well.  I'm from Sydney and have bone mets.  I'm not on chemo, but would like to be your buddy if you like.  Maybe we can meet in person.  Maybe you can message me, I would like that very much.

[withasmile]

glad you slept better xx

2 kittens, no not a breeder just a soft heart! Rescue kittens and very timid but they've stopped hiding under the kitchen sink and have discovered they love the heat of the woodburner on their tummies so they creep in front of it and curl up together.

Had a lovely day today, felt quite 'normal' which was nice

xx

[Moijan]

Gota better one last night Withasmile thank yoiuxx

b cold today tho.

how many kittens? Are you a breeder?

Mx

[withasmile]

sitting here happily reading your plans to visit Oz Moijan...so amazing to chat with likeminded people on t'other side of the world.

Good luck with your move Marnster, and starting the new trial...I have no recollection where I saw it but they have high hopes for this drug.

I know what you mean about the port Moijan. With much surgery and two botched reconstructions my upper bod resembles a join-the-dots game, but I still felt really invaded to have something so 'alien' fixed inside me. I didn't mind having it put in but I do mind it being there.

The best thing about it was putting the dye through for the last CT scan because previously my veins have blown and I've ended-up with huge arms and hands.

Out into the frosty morning now to take the kits to the vet for their jabs.

Hope you both have a good w.e and you get some good nights sleep Moijan

xx

[Moijan]

Oh. Do you know what Marnster? You told me that before...yesterday and I did look that drug up.

im not dementing, honestly! i again had a bad night ......and I think all the concrete gets in the way!

yes Sydney is a passion for me...am sure I must have told you I emigrated to oz in my 20s?

I worked at - Sydney, Sydney E. and RPA. (Just tried to message you but no luck)

yes my rellies are in Manly and I used to travel on the ferry over( a much older version of ferry than now!)

to see them.  We went back in about 2008 and stayed with them, also revisited the domain and woolloomooloo which had vastly changed, I was quite upset really, but things have to change. We then went to stay with friends in Brisbane.

my next visit wouldnt be that long, really, and would be a complete repeat of last time, but more exercises on the plane as now am on blood thinners...last time there was a group at the back of the jumbo...all doing their exercises! 

Best of luck with the drug...and please keep in touch...may pm youxx

Moijanx

[Marnster]

Hi Moijan

In my profile it says my photo is pending approval, so maybe it will turn up eventually!

The trial that my oncologist is trying to get me into is with Keytruda.

I'm in Sydney at the moment but moving back to Brisbane in a couple of weeks.

Where are you thinking of visiting in Australia? Did you say you had family in Manly?

Sydney is beautiful so you should definitely visit. And go to the Great Barrier Reef too if you can!

[Moijan]

https://forum.breastcancercare.org.uk/t5/media/gallerypage/image-id/3286iCD871BD400CED752

Ooh, thats not worked! Xx

[Moijan]

Hello Marnster,

which trial are you going for? .......yes I recall your saying that now....so sorry

am planning for a teensy trip to oz this year, where are you?

photos are traumatic arent they? Will just see if I can get puss pasted in?

Mx

[Marnster]

Trying again with my photo!

I'm stopping Eribulin because my scan done at the start of January showed that all of my tumours had grown and I have new ones in my left lung. So unfortunately it hasn't been effective.

Hopefully starting a clinical trial in February to see if it can stop things growing.

[Moijan]

Hi Both...

 I think your story's really illustrates why I have been reluctant to go for it!

to have it put in, is easy, I know, but for me....it feels an added trauma and if it ended up really visible in my cleavage...it would add insult to injury as it is already limited....

if it subsequently became unable to have bloods done through it or mri mediums, I would feel pretty fed up that id had it done...however, im not saying never...just not now xx

Marnster, am still confused as to why you are stopping? Sure you explained but couldnt find it xx the photo sadly looks like a traffic sign lol....would love to see your dogs, are you able to download it to your account...

as then I think it can be placed into a post...not sure xx

Moijanxx

[Marnster]

Hello ladies! Sounds like everyone is doing pretty well. I have just got back from a mini-break at the beach with my dogs. I have tried to post a photo but I'm not sure if it will come through. I haven't seen a lot of photos on the boards. Round four is done and I will start round five next Wednesday. I think that will be my last round. The side effects have definitely lessened with each round. I barely noticed I'd had chemo this time.

I had my last day at work last week. Feels a little strange to have finished up working but I'm looking forward to having more time with my dogs, my family and friends. And fitting in some trips when I can. I now just have the pain to get through of packing, moving and cleaning my house to get through. Then I can relax!

i have my second portacath inserted. I got my first one out in April because we thought we were all done with treatment, at least for quite a while! But then I had my second one inserted in October. I had no problems with my first one but this one sort of stopped working after its third go. We can still use it for chemo but blood doesn't come back out of it now. The nurses said it can happen and it's not rare, however I never had that problem with the first one. It's a bit disappointing but easier than trying to find a vein! Apart from my blood tests, of course. 

Take care!

[withasmile]

oh Moijan, those chase-the-vein days are a right pain.

After resisting  for many years I did finally relent and have a Portacath fitted when I began this chemo regime and it has speeded-up the process. I opted for the one thats completely under the skin.

Out with friends one evening and wearing a lower neckline, the bump and shape was quite visible. I noticed someone looking at it so told them it was a phone charger!!

Sorry to hear about about the +1

Keep well

xx

[Moijan]

Hello Withasmile,

thank you. Had one of those days of 'shy veins'..chase the vein, some of us call it,

..I know much about ports, but have opted not to have one just now,.... anyway, today was possibly harder as id eaten too much sugary stuff last night....yes my tms have fallen to..what was 77, but latest result showed a plus of 1....which I have never had before on Erib...hope its not the start of a u turn!

will have to wait and see next time, they are only done three weekly.

talk soon and hope your indigestion improves...what a pain eh? i get that too!

love and hugs, Moijanxx